A Cultured Life…

…stumbling through life with two beautiful daughters – often tripping, sometimes running!!

Falling down a rabbit hole, and how

After ten months in a what seemed a windowless space, I am gingerly making my way towards the proverbial light at the end of the tunnel. What awaits at the fringes of the light roils my brain but I am determined to persevere. You see, I have no choice.

Ten months ago, I was diagnosed with Multiple Sclerosis.
This is my coming out moment
This is my story, through the MS lens
A telling of everyday battles
A rendition of of the everyday amazement that MS brings
Basking in the new addition to my repertoire – ‘newly diagnosed’ (About Me)

But I get ahead of myself.
How did I get here?

01/29/17: It started out as a harmless Sunday, an afternoon walk on a surprisingly balmy afternoon and ended with a trip to the ER with two fractures in my left foot. I left the ER wobbly on crutches, sorry for myself and trying to mentally climb the stairs to my second floor apartment.

By the 5-week mark, I was beset with painful tingling and numbness. In between working from home and navigating crutches, yet grateful for my limbs, I turned to googling my symptoms. While the google prognosis was hopeful, in the next couple of weeks, my fingers turned to claws and I had to peel and unpeel my fingers around a coffee cup.

By the 7-week mark, the tingling and numbness was driving me crazy. Showers which were previously a challenge in an able bodied bathroom, now filled me with terror. Opening a bottle of shampoo, applying it to my hair, was agonizing. I realize now that our water consumption must have gone up two fold because I could no more be sure if the conditioner was completely washed off.

A 6am call to my orthopaedic’s after work line confirmed what a distant part of my brain already knew – I needed a neurologist.

Even with the best insurance employment could buy, the first appointment was three weeks out. In a panicked state, I made appointment with whoever had availability. Thus began my consults with four neurologists.

From my first, DrA – Many lab tests, two MRIs, weekly B12 shots. I also went in for a steroid infusion. At this time, I had no inkling of what was down the road. However, during the office visits, in that empty space while you wait for the doctor, I would look around the room and take in the books and magazines on display. However, my eyes kept being drawn to an MS book on display. I think after the many office visits, my subconscious and brain were forming their own connections, even as i fought to keep it down.

I will never forget the moment I heard my diagnosis, the second week of April. I felt a scream erupting my throat and could only croak “I want my husband”. husband was waiting outside, catching up on work calls, no idea how things were already changing around us. Once he held me, I burst into tears. That was when I heard the sentence that scarred my soul – ” Don’t worry – you will not die of MS, you might more easily be hit by a bicycle or car”.

I wanted to be hugged, be held tight, told that everything would be alright.

I hated her for that – but along the way and in these few months, I have come to understand what she meant. Don’t kill the messenger, right? 🙂

My second, DrB – my plan B at a facility close by (Pun unintended!) because my Plan A choice was out of county. He was kind, efficient and spent time talking to me and doing a solid clinical exam. I am on the treatment plan recommended by him and would have been happy to stay with him.

My third, DrC – The ‘Expert’, a God in the MS field in my part of the world. By the time I went to my appointment with DrC, I had been fitted into DrD’s schedule (Neurologist #4) who was my Plan A from above. So this was just a checking of the boxes because of the appointment was got and my deductible met. I loved the man – the confidence, the experience, the Can Do personality which is exactly what i needed. Best of all, Neurologist #4, DrD and he are collaborators and seemed to have a mentor-mentee relationship. He promised to get a note over to DrD about this consult (which he did)!!

The last on the list, my current DrC is young and already a leader in MS treatments. He deserves a post all of his own and for purposes of this post, I am happy to have been 4th time lucky.

I have heard that people go through changes with their doctors, either because they overlooked, neglected, or reduced to just another one walking through the door. I want to think that I have found my match (medically:))

Is this what dating feels like in the age of BharatMatrimony, eHarmony, Match, Tinder, et al?

Now for the real work-

I am reading, no devouring, the material out there and boy does it exist!! I need to keep a written list of sites that I should frequent because my bookmarks list is an ungodly mess!!

I am also seriously researching CAM therapies (Complementary and Alternative Medicine) – I hate pills you see. I have quite a collection on my counter but these are non-symptomatic pills (I might have just coined the phrase !)

I love Essential Oils! Have invested in a variety of oils and a Diffuser.

Essential oil

I hold my children tighter, I cherish my husband more than before

I have made peace with the fact that my hands many never come back to pre-MS state. I miss the sense of touch—

Girding up for interesting times ahead. I take encouragement from many wonderful souls who have been grappling, dealing MS far longer than I have. I have come to the somber realization that if I have harbored a desire to do anything, I should do it NOW

I will quote William Henry Davies in his poem Leisure ” What is this life if, full of care, We have no time to stand and stare.”

My time to stand and stare is now.

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